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Follow-up after cancer: a typology of young people's health care needs

Follow-up after cancer: a typology of young people's health care needs
Follow-up after cancer: a typology of young people's health care needs
Background: the paediatric oncology community is focused on providing appropriate care to survivors of childhood cancer, given that despite increases in survival rates it is estimated that 60% will have one or more problems related to their disease or treatment. Agreement and consistency in how follow-up for this group of young people should be designed and delivered has not yet been reached and rarely have young people been asked to contribute to this discussion.
Methodology: the study aimed to find out what young people who are receiving long-term follow-up for childhood cancer would like from their follow-up service. It aimed to illuminate the dimensions of care valued by young people as well as make explicit to professionals health care needs that must be met to provide optimum care into their adult life. The emphasis was on qualitative, participatory methods using reflexive and responsive approaches to give primacy to the voice of participants. Data were generated through a series of workshops, interviews and questionnaires.
Findings: forty young people (12 male: 30% and 28 female: 70%), participated in the study. Preliminary analysis yielded a descriptive typology that could serve as a basis for classifying and clarifying health care needs: defined as what the young people in this study wanted from a follow-up service. Five categories of health care need were identified: (i) need for a positive relationship with health care professionals; (ii) need for information; (iii) need for communication; (iv) need for parents to be supported; (v) need for health care professionals to have appropriate knowledge.
Conclusions and relevance to practice: young people in this study were clear about the structure and process of a service that would meet their needs. Assembling data into a typology of health care need presents those delivering and commissioning services a tangible indicator of outcome that can be confidently described as what young people want from any current or future model of follow-up service
young cancer survivors, long-term follow-up care, typology, participatory research
1361-9004
133-146
Gibson, Faith
b537d483-3f20-4f15-a9b8-880758746728
Aslett, Helen
c0a7d2ec-d20b-4d3f-8cda-0f8f461c986c
Levitt, Gill
2e408b22-c00e-403a-97a6-548660d6fda2
Richardson, Alison
3db30680-aa47-43a5-b54d-62d10ece17b7
Gibson, Faith
b537d483-3f20-4f15-a9b8-880758746728
Aslett, Helen
c0a7d2ec-d20b-4d3f-8cda-0f8f461c986c
Levitt, Gill
2e408b22-c00e-403a-97a6-548660d6fda2
Richardson, Alison
3db30680-aa47-43a5-b54d-62d10ece17b7

Gibson, Faith, Aslett, Helen, Levitt, Gill and Richardson, Alison (2006) Follow-up after cancer: a typology of young people's health care needs. Clinical Effectiveness in Nursing, 9 (3-4), 133-146. (doi:10.1016/j.cein.2006.08.005).

Record type: Article

Abstract

Background: the paediatric oncology community is focused on providing appropriate care to survivors of childhood cancer, given that despite increases in survival rates it is estimated that 60% will have one or more problems related to their disease or treatment. Agreement and consistency in how follow-up for this group of young people should be designed and delivered has not yet been reached and rarely have young people been asked to contribute to this discussion.
Methodology: the study aimed to find out what young people who are receiving long-term follow-up for childhood cancer would like from their follow-up service. It aimed to illuminate the dimensions of care valued by young people as well as make explicit to professionals health care needs that must be met to provide optimum care into their adult life. The emphasis was on qualitative, participatory methods using reflexive and responsive approaches to give primacy to the voice of participants. Data were generated through a series of workshops, interviews and questionnaires.
Findings: forty young people (12 male: 30% and 28 female: 70%), participated in the study. Preliminary analysis yielded a descriptive typology that could serve as a basis for classifying and clarifying health care needs: defined as what the young people in this study wanted from a follow-up service. Five categories of health care need were identified: (i) need for a positive relationship with health care professionals; (ii) need for information; (iii) need for communication; (iv) need for parents to be supported; (v) need for health care professionals to have appropriate knowledge.
Conclusions and relevance to practice: young people in this study were clear about the structure and process of a service that would meet their needs. Assembling data into a typology of health care need presents those delivering and commissioning services a tangible indicator of outcome that can be confidently described as what young people want from any current or future model of follow-up service

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More information

Published date: 2006
Keywords: young cancer survivors, long-term follow-up care, typology, participatory research

Identifiers

Local EPrints ID: 69114
URI: http://eprints.soton.ac.uk/id/eprint/69114
ISSN: 1361-9004
PURE UUID: 4b5460b7-9b5d-4c49-ba26-56b7cd725255
ORCID for Alison Richardson: ORCID iD orcid.org/0000-0003-3127-5755

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Date deposited: 16 Nov 2009
Last modified: 14 Mar 2024 02:55

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Contributors

Author: Faith Gibson
Author: Helen Aslett
Author: Gill Levitt

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